When Hope Fades: Debate Rages Over Who Should Decide When Treatment Stops

Sun Hudson's life was extremely short, but he garnered much
attention at the center of a controversy over who should decide
when continuing life-sustaining treatment is futile.

Sun was born in 2004 with a fatal genetic disorder that left his
lungs too small to sustain life. But his mother objected when
physicians at Texas Children's Hospital in Houston sought to
discontinue life-sustaining treatment.

The case ended up in court and brought national attention to a
Texas statute that allows doctors and hospitals to stop treatment
in futile cases even over the objection of the patient or his or
her family. Some right-to-life organizations, who supported the law
when it was originally passed in 1999, now say the law is unfair to
families and want to change it in the 2007 legislative session.

Physicians and hospitals, however, say the law works well. They
warn that opponents' proposals to change the law could have dire
consequences for patients and for physicians' ability to exercise
their independent medical judgment.

The Ethical Dilemma

The Texas law was enacted in 1999 after the Texas
Advance Directive Act Coalition (composed of groups interested in
end-of-life care issues) developed a compromise agreed to by
organizations representing physicians, hospitals, nurses, nursing
homes, right-to-life advocates, disability rights advocates, and
others.

The law allows a physician who believes further treatment of a
patient with a terminal or irreversible condition is inappropriate
to initiate a formal process to discontinue care over the objection
of the patient or family. The case must be reviewed by a hospital
ethics committee. If it agrees with the physician's assessment, the
patient or the family is given 10 days written notice that
life-sustaining care will be discontinued unless the patient is
transferred to another facility.

The Texas Right to Life Committee was part of the coalition and
signed off on the law in 1999, but now says it is unfair to
families.

"The law does not serve families well," said Elizabeth Graham,
the committee director. "It gives the medical community complete
power to deny life-sustaining treatment to these patients, and the
family members really have no recourse."

Ms. Graham's organization wants families to have more time to
transfer their loved ones to another facility.

"Ten days is gravely insufficient," she said, adding that no
family has been able to secure a transfer in that time period.

During the 2005 legislative session, about the time a Houston
judge ruled that Texas Children's Hospital could withdraw
life-sustaining treatment for Sun Hudson (he died March 15, 2005,
after his breathing tube was removed), state Rep. Bryan Hughes
(R-Mineola) offered an amendment requiring physicians and hospitals
to continue treatment for any Medicaid patient until a transfer
could be secured. If no other facility would accept the transfer,
treatment would have to be continued indefinitely.

That amendment was withdrawn, but it prompted House Speaker Tom
Craddick (R-Midland) to direct the House Public Health Committee to
study the adequacy of the current law prior to the 2007 session.
The issue also likely will come up in the Senate Health and Human
Services Committee, which also is examining ways to increase the
use of advance directives.

Supporters of the current law are concerned that Texas Right to
Life will seek to revive Representative Hughes' amendment but
expand it to all cases in which physicians think further care is
futile or inappropriate.

Robert L. Fine, MD, director of the Office of Clinical Ethics at
the Baylor Health System in Dallas, testified at a House Public
Health Committee hearing in August. He says requiring indefinite
care for terminally ill patients or patients with irreversible
conditions would destroy a necessary tool for physicians.

"There are all kinds of complexities, all kinds of human
emotions that play into decisions near the end of life," he said.
"The point is, we don't have to use this process that often, but
when we need it, we really, really need it."

Indeed, data show that the 10-day notice process has been used
sparingly. Statistics from nine major tertiary care hospitals
across the state indicate that physicians formally or informally
consulted hospital ethics officers about ending life-sustaining
care more than 2,800 times between 2000 to 2005, but the
inappropriate treatment provision had been invoked only 57 times.
And of those cases, only 48 10-day notice letters were issued, and
treatment actually was withdrawn at the end of the 10 days only 26
times.

Dr. Fine says disputes on continued treatment usually are
resolved through counseling the family and explaining the rationale
for the doctor's decision. The exception normally occurs when
family members are split over whether to let their loved one
go.

A family's opposition can prolong the patient's suffering, he
says.

He pointed to the case of a woman in her 20s who was dying of
advanced cancer. Her physicians knew further treatment was futile
and wanted to discontinue her treatment.

Her family objected, however, so physicians kept her alive for
another 27 days in an intensive care unit on a ventilator and
administered narcotics to keep the pain at a level she could stand.
When care finally was withdrawn, she died within a minute.

Two other instances were cited in briefing materials for
legislators. Both involved patients dying from heart disease. Their
families would not accept the recommendations that treatment be
stopped.

"In both cases, the dying and the attendant suffering of the
patients were prolonged … but the patients still died."

Hope for Consensus

Despite rancorous testimony at the August hearing, all sides
seem willing to work through the Texas Advance Directive Act
Coalition to resolve the problems. Ms. Graham says her organization
hopes to reach a consensus on extending the 10-day notice period.
Texas Medical Association and Texas Hospital Association officials
say they simply want to resolve the dispute in a way that focuses
on the patients' best interests while being fair to the
families and the physicians.

Austin lobbyist and coalition chair Greg Hooser, JD, is
confident that agreement can be reached. "We were in precisely this
same situation and same dismal outlook in 1998 and 1999, yet the
coalition did come together with a consensus bill. I expect the
timing to be about the same this time."

Ken Ortolon can be reached by telephone at (800) 880-1300, ext.
1392, or (512) 370-1392; by fax at (512) 370-1629; or by email
at
Ken Ortolon.

SIDEBAR

TMA Provides End-of-Life Care Assistance

The
TMA Web site
offers a wealth of information on medical ethics and
end-of-life care issues.

The site includes information on advance directives - including
guidelines for physicians and signers, and forms for people older
and younger than 18 - distributed by the TMA Board of
Councilors.

Also available are medical power of attorney information and
forms, the American Medical Association's Principles of Medical
Ethics, opportunities for medical ethics continuing medical
education credit, and current TMA Board of Councilor opinions.